Better care and better communication urgently needed

Europe's leading oncologists called today (19 October 2002) for clinical services to be improved and standardised throughout Europe in order that all patients with cancer receive the best possible treatment. All governments must make more effort, they said, particularly in Eastern Europe, to provide the infrastructure that will enable physicians to treat their patients more effectively.

At the start of the Congress of the European Society for Medical Oncology in Nice, France, Professor Heinz Ludwig, President of ESMO, said, "It is a tragedy that thousands of lives could be saved if there were more oncologists and more institutions dedicated to cancer care."

Not all countries recognise medical oncology as a speciality. "Medicine has become so complex that it is essential to specialise. But more than that, we need qualified and determined people with a genuine humane desire to improve people's health," said Professor Ludwig. To this end, ESMO sees its most important role in providing the best training for oncologists and publishing guidelines on Minimum Clinical Recommendations in order to be able to offer best possible care to cancer patients. By harmonising the quality of education for professionals all over Europe in co-operation with North America, training courses can be validated for global impact. Professor Ludwig's ambition as president of ESMO is "to improve education for professionals and focus more on our patients' needs. We will highlight to our members the importance of better communication with their patients."

"Poor communication between doctors and patients is a reality, but we are seeing signs of improvement," said Dr Paris Kosmidis from Hygeia Hospital, Athens, Greece, President-Elect of ESMO. The former attitude of 'doctor knows best' has changed. Patients often are well-informed and now seek a partnership with their oncologists. Health professionals and oncologists need to empathise with their patients, giving them the confidence and opportunity to discuss not only their treatment but also the emotional, personal and practical aspects of their illness. "The ESMO Congress is leading the field by organising - for the first time - a special Patient Seminar where people with cancer and oncologists from around the world have the chance to exchange knowledge and opinions on coping with cancer in its widest sense," said Dr Kosmidis.

Good communication cannot be underestimated when it comes to recruiting patients for clinical trials. "Taking the time and trouble to explain what will be involved is essential for patients to make an informed choice," said Dr Elizabeth Eisenhauer from Queen's University in Kingston, Canada. Dr Eisenhauer, who co-ordinates clinical trial programmes at a national level, finds that some patients are enthusiastic about contributing to research which may help them and others, but it is their absolute right to refuse if they do not like the idea of taking part. "Patients need to understand that their treatment will not be compromised if they do not want to participate in a clinical trial and that they can seek an external opinion before they decide," she said. Investigators must ensure that the informed consent (or patient information) forms they want patients to sign to enter a trial avoid medical terminology and that the information is clear and complete.

Although there is more interest now in the changes a drug may make to a tumour at a molecular level, the ultimate aim of the process of clinical trials is to find out if a particular therapy makes a difference to the quality of life or the survival of the patient, to understand the degree of the benefit derived, and the safety and efficacy of the therapy. "With the best will in the world, laboratory tests including tests on animals cannot tell us whether new treatments will help patients," said Dr Eisenhauer.

Patient power, said Ms Kathy Redmond, can speed up access to innovative cancer treatments and increase research funding. Ms Redmond, an oncology nurse and health care consultant from Milan, Italy, went on to explain that patients can lobby governments for improvements in cancer services. Increasingly, European legislation influences the provision of national cancer services and, therefore, patients need to get organised at a European level and start to influence the European legislative process. Patients need to do this because only they can say directly to politicians, "we are going to die, unless you change the situation", which is a much stronger message than health professionals talking about the plight of their patients. "AIDS, mental health, and diabetes patients all have strong representation at European Union level, but there is no organisation that speaks out on behalf of all cancer patients," she said. She concluded by calling for the establishment of a European cancer patient coalition.

Health professionals have an important role to play in supporting the establishment of such a coalition and, therefore, Ms Redmond called upon health professionals with vision and a real understanding of patients' needs to become involved or indeed to set up the coalition. However, she emphasised that if professionals take the lead, they need to recognise that there will come a time when they must pull back and let patients take over. "This is not about egos: the patients should be the generals and the health professionals the foot soldiers," she said.

Chairman of the local organising committee, Dr Maurice Schneider from Centre Antoine-Lacassagne in Nice reinforced the significance of the ESMO Congress. "The first Congress back in the mid-70s attracted around 100 people and now, at our 27th Congress we are expecting nearly 7,000 delegates to attend." Over five days, more than 500 hundred presentations will cover a vast range of topics: the impact of the Human Genome Project, the socio-economic status of women with breast cancer, the management of ovarian cancer in elderly women, smoking and lifestyle, communication and care issues, imaging to predict response to treatment, to name but a few. A number of important clinical trials for major cancers will be reviewed as well as the effects of alternative medicines. "Additionally, patients can become empowered through the patient advocacy session to encourage patient groups to unite efforts with medical oncologists for optimal patient care," he said.

The quality of care is best when there is collaboration between medical oncologists, radiotherapists, surgeons, and other related services including social services. "Medicine requires a mix of high technology and a supportive mind," said Professor Ludwig. He admitted that it is difficult for doctors to keep track of all the data emerging from research, but, he concluded, "Every doctor wants to be a good doctor and he or she can be better with the judicial use of information available. It doesn't cost more time, but it does require more empathy with patients. Doctors will be rewarded by the recovery of their patients and a better outcome."

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